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I found this page on the OMF website: https://www.omf.ngo/reach-for-the-cure-join-team-omf/

After attending a very successful fundraiser over the weekend (I just attended it, did not organize it!) I thought it would be good to have a thread with resources to support others who want to hold a fundraiser. There are have been posts in several different forums about raising money for...

@andypants - I really appreciate the thanks! But I didn't do a single thing to raise that money. Any money raised was completely due to all the hard work of Isabela who did this for her high school senior project. The only thing I did was say a few words at the start of the event along with a...

A very quick update. The fundraiser was a big success. The total raised for OMF was $4,500! :jawdrop::D And although I've had to rest/recover afterwards I didn't have a huge crash so that was a relief.

News about Evelien's testimony to Parliament has already been posted on the thread about the EU Petition but I thought the testimony deserved its own thread. This article by #MEAction includes a video: https://www.meaction.net/2019/10/03/me-activist-testifies-before-eu-parliament/

A short update: So far there have been 34 pre-registrations. At $20 per person that's $680 raised so far. And the weather is looking good for Sunday! I hope that will increase the number of folks who come which means more registrations and donations (some may make a donation without doing the...

You should definitely feel proud of that work! :trophy@

Thanks, @Andy! I also thought I had seen a link to this NIH call (audio only) & transcript so I searched. Someone posted a link on the CDC stakeholder engagement webinar thread. I like the idea of having its own thread so folks can find it.

For folks who more information on the background of the PCORI group (I had never heard of them but maybe I'm in the minority?) I found this article in Medpage Today (from Nov 2018). https://www.medpagetoday.com/meetingcoverage/pcori/76081 It's mostly about whether the group will be...

This is a bit of a digression, but you know how sometimes your mind realizes something a day or two later? It occurs to me that maybe the phrase "shooting pain" is not the right description for my pain. I think "shooting pains" are supposed to be pains that move from one part of the body toward...

Full disclosure: Isabela contacted me via email after seeing a post about my MillionsMissing event for ME Action back in May. She has asked me to attend this event to help hand out ME/CFS information. But even without that connection I'm happy to spread the word about any fundraiser that will...

What: 5K Run/Walk to benefit OMF (Open Medicine Foundation) When: Sunday, Oct. 6, 2019 Where: St. Paul Elementary School in St. Paul, Oregon, USA For more details, or to make a donation, go to https://openmedicinefoundation.crowdchange.co/9150

Nope I don't get any itching. Just the shooting pains. Nothing visible, just pain that feels bone deep. It's not surface pain (no skin pain, no bruising, doesn't hurt to touch it or push on it). The pain seems to be from something inside - nerve pain, circulation (veins?), muscle, bone, joint...

Thank you @wigglethemouse - my brain was simply unable to absorb the information!

To save folks the trouble of clicking the links the concert location is the Mystic Theatre in Petaluma, California.

@wigglethemouse - I noticed that the date of the comment you posted is 2014. Is that a typo? Or was that a comment about one of the previous studies? I did find this more recent blog post on the Dysautonomia International Web Site...

So sorry to hear this, @Squeezy and @lansbergen :( I also get shooting pains all over. Location is unpredictable - could be a finger or toe or heel or elbow or ??? - but the pain seems to be at a single point, not spread over a broad area. I've had these pains ever since my illness onset...

I sent email to the author & cc:ed the producer (if you click on the byline you can find their email addresses) asking for a headline change. FYI, this article seems to be the same one that is on the WGBH website here...

Bumping this up since the call is next week. https://www.cdc.gov/me-cfs/programs/meetings.html PS. No, I'm not super organized, I just happened to read about the call when looking at the CDC website so I went looking for this thread! ;)

I know QEEG testing has been around for a while. But I don't know how well accepted it is by doctors. Is QEEG testing useful in a clinical setting for any other illness? I'm not talking about ME, but for any other illness -- brain injury, depression, whatever. Or is QEEG still a mostly...